Cuddle

Tonight Tiddler gave me the most lovely cuddle.

Tiddler is 10.5 months old. She is physically delayed due to her Hypotonia (low muscle tone) in her upper body. She also wriggles and arches, out of frustration as much as anything else as her body won't work as she wants it to. Holding her in any position is hard work and she requires more support than a "normal" baby.

I was putting her to bed tonight, calming her down and she reached her arms up to my face and we cuddled.

Amazing amazing feeling. I am a lucky Mummy. We are getting there.

Does she have Down's?

We have not had a lot of sleep recently from Miss Tiddler. I hate to moan about that, you see we were blessed from about week 2 of her life to very good sleep, interrupted only by us waking her to feed. It seems she shouldn't really have been this sleepy but we didn't realise this at the time.

Anyway, after a few particularly sleep deprived nights, I decided to take Tiddler to the GP yesterday as I know one of the reasons behind her being disturbed is constipation. Sorry Tiddler, yes I am discussing your bowel habits on the internet. I wanted to check out the medication she was already on. My surgery were great at squeezing her in to be seen same day, I think this is a common baby policy... However this meant that we saw a new Doctor, never seen before.

Medication all okayed, and a brief chat ref. Tiddler's diet - "Do you give her fruit and veg?" Errr... no shit Sherlock- I was at this point inwardly rolling my eyes but reminding myself that she probably does have to tell some people this...

I then asked whether her Hypotonia could be the reason she is plagued by constipation? She said that yes, in her opinion it could and that low muscle tone in the bowel could definitely occur in someone like Tiddler. She then looked at Tiddler who was wriggling all over me at this point and asked "Does she have Down's Syndrome?"

My world went funny, I went dizzy, I couldn't breathe, I burst into tears. Looking back, did she say that or did she say "She doesn't have Down's Syndrome...does she?" I don't think it matters. I couldn't believe she was asking me this. Why was she asking me this? I could not stop the tears. Dr realised at this point all was not rosy and changed her tack. "OOooo yes, things can be hard when you have a child with health problems..." I was steeling myself for the "Have you got much support?" question when I blurted out how insensitive her question had been, how it had been asked before, how did she think that question made a parent feel? And in any case why did she say that as Tiddler didnt look like she had Down's, did she???

To give her credit, she backed down fairly swiftly, explained she hadn't meant to be insensitive, said no Tiddler didn't "look" like she had Down's but that sometimes you can't tell visually in any case. I more or less held it together till I left the surgery, and then bawled my eyes out.

You see, when Tiddler was born and transferred to SCBU on Day 1 of her life, people started to comment on her appearance. They used the word "dysmorphic" a lot. She had a battery of chromosomal tests or "karyotyping". A midwife came to SCBU to do a post natal check on me. Chatted for a few minutes, walked round to look at Tiddler, look at me and then said "you had the nuchal test, didn't you?" The only conclusion I could draw from that question being that she too thought Tiddler looked different and possibly had Down's.

Also, for months we had been receiving hospital reports that duplicated the last known diagnoses/ issues in bold at the top. Imagine reading a report that drops on your mat telling you again that your baby has "dysmorphic features". Its a horrid, cruel term. I flagged this up in the end and it was agreed that it was no longer the case and so removed.

That is just like the insensitive GP yesterday. Sometimes, healthcare professionals forget what words and labels actually mean and what it feels like to hear them, if you are a Mummy. The GP yesterday, given that she didn't know us, could have asked me to run through Tiddler's history quickly, or to ask if we had a diagnosis etc. Surely her NHS patient database flags up any diseases / conditions that each patient suffers from? If she had read even one entry in Tiddler's notes she would probably have gleaned enough information. If Tiddler did have Down's - it was still an insensitive sledgehammer approach that would have caused upset.

So yes I am angry, it still hurts to think about it but I am very pleased I managed to challenge her. I wouldn't have been able to do that before.

Lying, or rather not lying

More frustration today. Further to my bath seat rant...(we are still no further forward with that, I am waiting for the Occupational Health person to return off holiday).

Tiddler has always arched her back and neck. It looks awful, and we have put it down to reflux in the earlier days and thereafter thought it was a learnt movement. I have read elswhere recently that other children with Hypotonia also arch, so I have no idea as to the cause...

Anyway... last night she was lying on her back on her playmat and she arched her head right back- Tiddler's Daddy rushed to correct her as I can honestly say it looked like her neck was going to snap. The momentary panic and horror at how it looked literally brought tears to my eyes.

I spoke to our Physio today and she said that Tiddler would probably have self-corrected if we hadn't intervened and may not do it again, but that we should probably not leave her alone lying on the floor if we can avoid it. WTF??? She can't sit, I can't leave her in a chair as she arches and twists... she arches out of a Bumbo.... and now, now she can't be left lying on the floor???? Well how does that work then? How do I go to the loo/ prepare food/ answer the phone? I couldn't leave her for long at the best of times, but this really is like having a crawler or early walker but without the crawling and walking! The physio is lovely and normally very helpful, but I have to say this did not go down as one of our most constructive conversations.



I have all my hopes pinned on a Baby Bjorn chair- apparently they are impossible to get out of... we are borrowing one tomorrow. Fingers crossed! In the meantime, I shall also be crossing my legs as I clearly have to limit my loo breaks...

Ranting re bath seats

I have a dilemma.

Tiddler has sat, she can as I have written elsewhere... but she won't. Its too hard for her as the Hypotonia she has means she is like jelly- very wobbly in her trunk and shoulders.

We have been using a bath support shaped a bit like a shoe...anyway, we have had to stop using this tonight as she isn't at all safe in it. She wriggles over the middle pommel part as her legs are so strong, and into the bath.

That's fine I say to myself I shall buy one online tonight. Bob shall be my uncle etc etc. Clicked onto Kiddicare, nope...Boots, nope... Mamas and Papas... John Lewis.... nope and nope. So how do I find a bath seat for Tiddler? I think the only way we can safely bathe her is if there is a seat she is fastened into somehow. But it must be one that is very well supported as otherwise she can't remain upright. It seems that my requirements are too unusual for the vast market that is babycare products.

She has a feeding chair from the council and is getting a better play seat / feeding seat soon. I am so flipping irritated with myself that I didn't think about bathtime- why didnt I ask about this? Shouldn't they have thought of it? Am I just being unnecessarily angry?!

So- in the meantime, we will have to bathe together as holding her without a seat really isn't safe. Very annoying. What seems so simple just isn't possible to achieve.

Misfits or fraudsters?

Tiddler has come a long way. In our darkest days she has been tube fed, had lumbar punctures, canulas in her head, tested for all manner of chromosomal abnormalities, even checked that she had shoulder blades. She is no longer tube fed, has no chromosomal abnormalities and fundamentally is well.

Why then do I feel like I do? I have recently come down from the high of Tiddler's latest discharge from hospital, her feeding VASTLY improved and the Paediatrician being pleased with her.

I met up with some Mummy friends over the last couple of days, its the first time we have been in a group of same-aged babies for about a month. I have found it hard. I know its important to get out, to let Tiddler interact and see the other children. But at what cost? Sometimes I wonder if its worth it.

Some of the others are crawling, some are standing, some are cruising. Tiddler can't sit. Well- she can actually, she has started to fairly recently, the problem is she won't. I think its too hard for her as her hypotonia (low muscle tone)means she doesnt have the control in her trunk to sit very easily. Actually, if she could just walk she would be a lot happier as her legs are great and operate totally normally. Clearly though, you can't walk before you can sit. Thats probably the most visible difference. One of the Mums suggested a group photo of all the babies sitting, I literally felt dread as I knew Tiddler couldn't sit. I wanted the earth to shrink us up, I didn't want this difference to be so glaringly pointed out. The photo didn't happen, thankfully. I need to get over this sort of thing.

She is- of course- a Tiddler hence the irritating "Was she premature?" question referred to here. Weaning is slow due to delayed swallow, a strong gag reflex and her low muscle tone. She will be a Tiddler a while longer!

BUT, she's not poorly now, she doesn't have a life limiting condition, she is happy, on the button intellectually and a babbler bang on course. So why do I feel as I do? I feel guilty that I feel like a misfit. Tiddler has left hospital whereas others did not.

We have been offered a place for a couple of hours a week at a local childrens centre for children with additional needs. I feel like we don't fit in here either because thankfully she doesnt have a serious illness or disability. I feel like a bit of a fraud. I also feel like a fraud for tagging this blog on the "special needs" section of Netmums. Why? Is it because I haven't come to terms with Tiddler's health problems or is this just symptomatic of the no man's land grey of being without a diagnosis?

So yep, we are currently without a diagnosis. Tiddler is still under a Geneticist and the belief is that there is an overarching reason for all of her health issues but that we don't know what that is yet. Nor do we know when we will know! It may be that we never get a diagnosis for her, as I have recently learnt that this outcome is more common than you would think.

We just don't fit in. I have to get over it I know I do. I suppose the camp we fit in at the moment is the "without a diagnosis" camp! I am not good with grey....

Reasons to be Cheerful , 28th July

I really enjoyed doing this last time so here goes again:

1. Tiddler is still feeding! She cries for feeds, finishes her feeds AND is doing really well with solids too
2. I have spent lots of time with friends and their rugrats recently- nice as we have been out of action so much with Tiddler being unwell / in hospital etc In particular I really enjoyed spending time with a couple of old school friends
3. Tiddler is starting to sit! We have been told that she will be slow to sit / crawl etc as she has Hypotonia meaning low muscle tone. In effect, she is floppy. However, at physiotherapy the physio was really pleased with the progress Tiddler had made and she actually sat for the first time (propped up and at a really crazy angle!) when there. I am confident that she is well on the way to proving a lot of people wrong...

2am Shenanigans with Tiddler mark 2

Ho ho ho how I laughed to be woken up at 2 am for milk by Tiddler. Hilarious! The bizarre thing is that she has literally only ever done this once or twice when tiny tiny... now I know thats not normal, and indeed due to her size we were having to wake her in the night for feeds untill she was 4 or 5 mths old.

Its so funny, I keep saying it but I swear someone has swapped my baby! She has this voracious hunger (note to self- probably normal hunger) and its just so lovely to see. I don't really mind the 2 am thing, course I don't. Until you have had a baby who refuses milk to the extremes of dangerously low blood sugar or has been tube fed as the only means of getting milk down them, I don't think you can fully appreciate how bloody fantastic it is to have a baby that feeds!

This whole new baby malarkey (you know, the one that has been swapped) is confusing though. Solids are now also going really well, thanks to a special tumbleform chair being delivered by our Local Authority - very very swiftly I might add. Tiddler has Hypotonia (low muscle tone) and some breathing/ swallowing co-ordination problems and we struggled to get her to feed in her normal high chair as she slouched and was just plain not interested. This chair on the other hand has changed everything. She opens her mouth like a little bird and gulps her food down.

I am really enjoying cooking for her and watching her experiment with different flavours. I am trying to get the balance right though between solids and milk as I think at times she is filling up with purees to the detriment of her milk, hence the 2 am wake up call!! I am also anxious that we are behind a little in terms of food types- I am trying to encourage chewing but I will admit this is not going too well and I am terrified she is going to choke! Today I tried a bit of very ripe pear. Didn't go down too well it has to be said.

We are learning, but thats fine and thats normal. Normal is good. I have missed normal.